It has been awhile since I have posted. I apologize for my silence; you can probably reason that it takes quite a bit to shut me up. And you would be right. But this paincation has been particularly brutal. And since misery loves company, have a seat and I’ll bring you up to speed.

So May was a wash and a bit of a traumatic month in the larger sense as I learned that Tamoxifen had stopped working and the lesion in L4 had progressed. I wasn’t too surprised, really. I had a nerve block in the beginning of May that felt good for about three or four days and then I was feeling that deep burning bone pain. A new plan superseded the old: force me into mentalpause with Lupron and change the anti-hormonal to Letrozole. Another reason for such an extended paincation can be laid at the feet of the insurance company. Two weeks for this, three weeks for that, “we need to contact your physician to conduct a peer-to-peer review.” This procedure denied; that procedure approved with exceptions. It’s shameful, really. Meanwhile I was in pain, but using my pain meds wisely.

June wasn’t any better. The insurance company denied the nerve ablation that was to take place at the beginning of the month. Twitter made it possible to highlight their inaction and after my tweet, I had an email address within five minutes and Cigna made it right. Doc Pain said it was the easiest peer-to-peer he’d even done. The folks at Cigna were actually quite nice and professional and all was fixed by week’s end. Public shaming. Maybe the Puritans were right about something after all.

But in the end it was too late to be effective. Because nerve ablations are done on a particular schedule in the office, the entire month of June was a wash; it wasn’t done until the last week in June. I begged my doctor to release me to work. In my heart of heart’s I knew I wasn’t up to it, he told me I wasn’t up to it but I protested. I went back and lasted two days. Surely if I wanted it bad enough I could do it, right? Thoroughly humiliated from the experience, I stayed home.

And July. In addition to the third month of my paincation, this month marks a year from when I was diagnosed with this lousy disease. It has been a particularly rough year, but in ways not considered “routine” by breast cancer standards in popular culture. You see, I’m an invisible breast cancer patient. I have my hair, I have my breasts, and I even have my tumor (but not next to the wisdom teeth I still have in my drawer). Unless you know that I have breast cancer, I look none the worse for another year’s wear. You can’t see pain. You can’t see disappointment. Sadness. Confusion. Career in shambles with significant people already writing me off as dead. No, I’m fine.

You know that 1 to 10 pain scale that hangs in your doctor’s office? That is such bullshit. If “10” is the absolute worst pain, then I’m thinking an angry face with fists punching out a wall is more appropriate than the sniveling sad face. Obviously a pain scale created by someone who had never felt pain at a “10.” Most of my paincation can be rated somewhere between one of those little faces smirking and flipping the bird and the little face punching out a wall. Better yet, let’s make it between 4 and too serious for numbers.

This past Saturday I was looking forward to having dinner out with friends. It was also an opportunity to meet some new people too, so I was psyched. I haven’t been able to get out a hell of a lot. But karma had other things planned for me. I’ve been taking 2-4 doses of Oxycodone a day (often less, quite frankly) since May 1. When you take opioids, the first thing you need to be mindful of is constipation. And I had been doing a pretty good job of staying ahead of any troubles. Drinking lots of water, taking the necessary pills, and eating fiber and whole grains. Like anything else, though, for a few days I began to slide a bit and wasn’t drinking water as much as I should have. And just before I was to leave for dinner, what I thought would be a routine pit stop turned into the worst case scenario. I was hit with nuclear constipation. Yes, the abominable impacted bowel. So when my friends drove up to the building to get me for dinner, they actually wound up taking me two blocks to the emergency room. Once we arrived I sent them on their way as other people were expecting them at the restaurant.

It was, as you might imagine and without a doubt, the most embarrassing and humiliating circumstance, but there was no choice but to address it and get through it. But that turned out to be harder than I thought it would be. In addition to the primary complaint, my back was sore. This whole paincation is the unhappy intersection of bone pain and a 30-year-old laminectomy. I laid on the gurney using my folded shorts and sweater as a pillow. I was cold and uncomfortable, and as more time went by I was less and less able to advocate for myself. I was so cold I was shaking. The Scorch, who can usually strike an intimidating presence, became more and more like a spent firecracker.

I texted my sister to let her know what was happening and she was sick that she couldn’t be with me. She asked if anyone was with me and I answered: “No. I’m alone. As always.” That response was not hyperbole. Since the day I was diagnosed I have faced this bloody disease alone.

I found out I had breast cancer alone, had biopsies alone, and learned the results alone. I faced hours waiting for appointments and tests alone. There was never anyone to hold my hand when I was scared. No one to ask the questions I forgot or to advocate on my behalf when I was too tired or too high to do so myself. There was no one to nose around for information while I was busy getting blood drawn or an x-ray done. No one to make a decision because I kept insisting on making the stupid ones (more on that later). No one to help me sort through the pile of unpaid bills and unopened letters because I’m so otherwise overwhelmed.

This is in no way a passive aggressive complaint about my friends. I have the best friends in the world. Indeed, you would be hard pressed to find better people. Unlike a family member who can be blackmailed into spending hours of wait time with us, we have more respect for our friends! I could probably have a long line of people wanting to hold my hand, but I don’t want to impose. (And, no, this is not a passive aggressive request for anyone to do so.) Colleagues, the greater #BCSM community, and the blogosphere have all been incredible. My friends have made me meals, brought me dinner, and sat and watched movies with me. They’ve always been there to listen and to support me. And as wonderful as they are, I wouldn’t shoulder any of them with the responsibility to, say, be my emergency contact.

Indeed, I have no emergency contact. Mine is the story of those women and men who don’t have one. The people who go to the ER alone because essentially they have no other choice.

I was waited on very quickly in the ER, but a change of shifts complicated things just as the department got busier. I didn’t know how long I would be laying there. The methadone I took earlier in the day had begun to wear off and the bone pain was building. The ER nurse checked on me once in two hours. She never so much as offered me a blanket or a cup of water. And I was increasingly unable to advocate for myself. I had texted my friend Marie on and off; when I texted her again at 9:00 pm she was surprised to learn that I was still there (I had been there since about 5:15). She asked me where the emergency room was located and she was with me in 30 minutes. Once she arrived she advocated for me. She found a blanket that helped keep me warm and gave me some dignity. A small pile of gowns served as a perfect pillow. She held my hand and joked with me.

After I took the Valium she sat with me and urged me to sleep, and she made sure the doctor didn’t forget me before it wore off. She stayed close by during the indelicate procedure and was right there to rub my shoulder for comfort when it was over. And once the back pain increased to the point where I began talking to myself as I lay on the gurney, she made sure I got my discharge orders and was able to leave. When we left the ER, we crossed the street and she had to stop me from walking the two blocks home and hailed a cab. (See what I mean about stupid decisions? You don’t think straight when you’re in pain like this.)

As Marie trekked to the pharmacy to get stuff, I took a shower and tried to regain my dignity. And when she came back I told her that this had been the first time anyone had ever shared the burden with me. It made such a difference. I was free to be the patient, free to hurt, and frankly free of the responsibility of holding it together. For the very first time.

I wrote not too long ago how hard it can be to face disease alone. But it was the laundry, the cleaning–those practical every day hurdles. The art of distraction when I decide to look at disease in a larger context. But I hadn’t really considered what alone really meant until I lay there in the ER, pain coming from two locations, the one slowly and consistently taking me over to the point where I could no longer really advocate for myself. To be able to lean on someone, instead of having to keep it together. The love that comes through someone just holding your hand.

If you have it, never take it for granted.

If you don’t, I am there with you. I know how you feel. And, yes, it blows.

Oh Scorchy. What can I say. This is probably one of the most moving and affecting blog posts I have ever read. I have tried and tried to leave a comment for days, but it always ends up sounding trite or worse patronising. In the end, I am just going to go for it and hope you know that my words are heartfelt and sincere. What I really want to tell you about is the overwhelming feeling of compassion and love I felt for you reading your words and picturing you alone in that ER. I wish I could bottle the love and heartfelt good wishes that so many of us have for you and send it to you express delivery. Much love to you dear one xxxx

Love to you Scorchy! From this point forward may you continue to have someone to lean on, or some comforting touch when you need it. May you never ever be alone like this and in pain again! Hugs to you and give your friend a big hug from me. x

Scorchy, this post was anguish to read. I’m so very upset about all you’ve been going through…the pain, the noncaring nurse, the alone-ness. Just know there are so many people in the online community who care very much for you. And your friend Marie is so special. Sending you love and hugs,

Honestly, Beth, just knowing that helped to sustain me. I spoke with a “counselor” recently who so downplayed this kind of support. Just like cancer, if you haven’t benefited from it you just don’t get it. xoxoxoxo

I just ran across this NIH abstract of a study on tamoxifen and turmeric. It appears that turmeric ( the yellow spice in curry) sensitizes cancer cells to tamoxifen. It’s a cellular study but it may be worth discussing with your doctor. You may not have the cell lines that were used in the study, but since there appears to be no side effects, it might be worth a try.http://www.ncbi.nlm.nih.gov/pubmed/23299550

Oh, Scorchy, I’m so very sorry to hear this. Just really sorry… Sorry to hear of the pain, suffering, the aloneness, the struggle, and on and on. Thanks for letting us know how you are. You may be alone in much of this, but so many people care about you and are with you in a sense behind the scenes. Sending much love.

I was worried, you had been so quiet. I hate this. I hate that you’re still in such pain. I hate that treating pain causes more pain. I hate that you’re doing this alone. And I truly hate cancer.

God bless your friend Marie. If you are half as amazing in person as you are online, there have got to be a lot of friends like her that wouldn’t feel “burdened” to help you face this beast. Geez, I say that like I’m good at asking for help!

I’m in no position to offer useful advice. But know that I care very much about you.

Thank you, Deanna. I honestly wasn’t angry at the docs–it was clear that this ER was stretched. But the nursing staff? They need to knock it up a notch. She comes in and says, “So you’re ready to go home?” I did a face palm. D’oh.

I am so very sorry for what you have gone through, and for what you continue to endure. I’m embarrassed for the medical profession for how you were treated in the ER. Much love to you AND to your friend Marie.

Wow Scorchy. You have been to hell and back too many times. I really hate that you have had to go through this alone. I’m so glad you reached out to a friend this go around. Why the heck doesn’t the hospital have patient advocates. There should have been someone there to be by your side. My heart breaks for you and I pray they get your pain under control. You have been so strong and the FBC keeps knocking you down. Send love & strength your way.
Deb

Before I get on a soapbox, Scorchy, I am sad to hear how you have had to handle so much by yourself. That sounds lonely, frightening, and unacceptable. It is a sad thing that a person suffering from the effects of cancer has to shiver in a cold hospital room without an advocate when an alcoholic or drug addict can find an AA meeting or a sponsor to help him or her through a crisis by visiting aa.org or making a phone call. We will have to figure out a way to advocate for our own the way AA can do it for its members. Maybe we should start with “steps” that will open us to give and receive care. Because that’s part of it, I think. We already feel so vulnerable and that makes it tough to ask for help until we are in quite a state. And, as many find out over time, metastasis means people need help again and again. People start to feel that they’ve dipped too deeply at the well of others’ kindness. They ration their own requests for assistance like there are limits to how much they need this help. In fact, the longer treatment and pain management continue, the more they need help. I just read someone else’s blog today and was stopped in my tracks by the image of another person with “mets” alone and suffering. In the relatively short time since my diagnosis with a stage one uterine cancer (bad enough but in no way as daunting as stage four breast cancer), I had plenty of help from others, but I also had to spend almost a week in a hospital over the Christmas holiday with no one to fight for me. That was just one week, and I still remember thinking that lack of attention to my chemo-caused infection might kill me when my treatment was only adjuvant. If I could deteriorate that swiftly, then what of the people whose conditions are chronic and for whom treatment options become limited or nonexistent? I identify with what you said Scorchy, about being strong until you are not. I can fight, but there are times when everything is a little too much for anyone to handle alone. One of the things that might help is to find out what resources already exist and how they work. Like every hospital already having a patient advocate on staff. When I figured out such a person existed at my hospital and demanded to speak to the person I finally got action, but, by that time, I was feeling physically, emotionally and mentally broken. I heard about the advocate on staff after I called and asked for a priest! Maybe we could come up with a checklist for people to carry in their wallets so that they would be reminded of ways to get help when no one is available in their personal lives. Another thing might be to explore whether it would help if we united resources. After all, when it comes to funding cancer research, different people with different cancers may need different organizations to represent them. But when it comes to patient advocacy, does it matter if we all help others? So maybe the American Cancer Society is the right umbrella. I’m willing to look into it. Scorchy, am I right that you live in Phili? If I’m being naïve and this has been done and doesn’t work, let me know. Because I cannot read about another person suffering this way and not try to improve the situation.

Oh Scorchy, I am just so upset for you. I understand your need for independence but I also am so glad you accepted the help of your very good friend Marie. I understand you not wanting to be a burden, but at the same time I want you to know that the real people who care about you sometimes need to be needed and are only too happy to advocate for you. Yet when you are in the type of pain that you are in, it’s so hard to think straight. Pain sucks. This disease sucks. I understand how others haven’t a clue about what’s going on. I know the paperwork of bills piles up and what they put you through with the insurance is deplorable. Yes eventually you got a nice person on the phone, and it’s rarely the person’s fault who finally helps you with a problem. Mostly though please know you are such a special person and I wish you weren’t so hard on yourself. This damn disease really puts so much pressure on you. That’s what really makes me crazy about how truthfully horrible this disease is especially with effin mets. I wish I had the magic wand at least to make this pain stop. Know this you don’t deserve what’s happening to you and you have the right to be helped and demand these doctors do something about the constant pain. Meanwhile I appreciate that you wrote this post and spoke your truth. I truly care and I wish I could be more help. I know these are just virtual hugs but they are real. xoxoxo – Susan

Scorch, reading your post is disturbing on many levels: the ER’s behavior lack of very basic care; all the pain you’re in day-in day-out; loneliness in a world filled with people; one year of slugging through this mess with no end in sight; the humiliation of constipation; and complete disruption of more pleasant plans to work again or share dinner with friends.

Part of why people want to read your blog is you’re thorough and explicate but, even more so genuine. You are a REAL person that all this is happening to, and you have no choice other than to endure whatever forces it throws at you. Overwhelming and exhausting, to say the least. It is truly appreciated that you allow us into your life, confirming so many things those inflicted would otherwise pounder in the silence of their own thought. It takes someone special to articulate these details, and for that we all thank you. All the accolades in the world can’t pull you out of this rut of sh!t but, maybe it’s one of those small things that still gives you purpose and drive. Thanks for continuing to engage and press your intellect for results because that is who you really are. Keep your head up my dear. ~Dd

I love the chart and really hate the story that goes with it. I am so sorry you have to go through all of this. I am happy you called Marie and that she was able to come. The emergency room is no place to be alone.

oh, scorch, honey, that you had to endure being so alone in that er, hurting and scared and cold – thank goodness you reached out to marie, that angel, and she came to you. I know how hard it is to feel one is imposing upon others – it truly sucks. but I am learning that those who really care about us don’t take it that way. still…it’s just so damned hard.

I used that pain scale in hospice. I was ashamed, and hated it, too. always kept a set of colored markers to let patients “enhance” those stupid little faces..

My heart is aching for your Scorchy. This sounds like a terrible freaking experience. Thank goodness for your friend Marie, and thank goodness for you allowing her to take care of you. Sometimes, we need to let people reach for our hands and hold them tight. Not everyone gets it, not everyone can cope – but I hope some can and will. We are here for you in the meanwhile, even if it’s only by twitter.

Very disturbed anyone would need an advocate to get a damn blanket in an emergency room–that is too simple a thing to need. I’d think an advocate would be for the “big stuff”.
It is strange to think of you as alone or maybe vulnerable, since your posts are so strong, I often assume you to be, as you say, “an intimidating presence”. Proves a point I’ve been thinking about for the past few months, after a very unpleasant experience, how none of us REALLY know the whole story of another’s cancer experience. (hmmm, wanders off to ponder my next piece of written proof of my malcontent nature).
Sigh, my thoughts are with you, my brain holds your hand, if it helps.

Scorchy, I am so sorry you have to endure that pain. I am thinking of hiring a big burly mean-ass mutha to scream at the suits at their desks in the insurance offices “QUIT PRACTICING MEDICINE WITHOUT A LICENSE ASSHOLE OR I WILL COME DOWN THERE IN PERSON & BREAK SOMETHING”. As soon as I find one, I will loan them to you.

Oh, Scorchy, I’m sorry. I hate how you’ve been alone through so much of this. I really do. I know reading words of your blogging friends helps, but words are just a drop in the bucket aren’t they?
Many thank yous to your dear friend, Marie, for being there during this latest round to advocate for you and to hold your hand. And by the way, I have always hated that pain scale… hugs and promises to keep “listening.”

Sorry for you going through that, but I’m glad your friend got there. I think about you and re-read a lot of your posts as things unfold down here, but more truer words were never said than your comment about being an “invisible” breast cancer patient.

I’d imagine it meant the world to you to have her come there just to be there with you, when you’re on a gurney surrounded by strangers who have no clue what you are going through, and even if you told them they still wouldn’t know a thing.

Scorchy, like KT, I’m not sure what to say, either. This is a pain that cyber friends cannot heal. You are one of the most resilient people I’ve encountered. You turn loneliness, anger, and pain into action time and time again.

Scorchy during one of my middle of the night sweats last night I was thinking about you and because indeed it had been awhile and I was concerned. As an old (old being long ago) nurse, I know how tough bowel impaction can be for the patient; loss of dignity, pain and you also had to put up with a bus ER and no one taking care of you while you waited an inordinate amount of time. I am so glad you called Marie and finally had an advocate and hand holder to boot. My year is coming up this week too but being Stage 3 not stage 4 puts me in a whole different world. I talk to a good friend often (she lives in Colorado and I live in Canada) who is stage 4 with mets in her spine and hips and who has spent days in the hospital trying to sort out the pain and it makes me think of all you have borne this past year. Thank you for giving us a head’s up today. May August be a kinder month for you!